– Mike Nelson, in one of 17 “nuggets” of wisdom he tweeted today. Click through on all the links. They’re worth your time.
“Learning is a lot more fun—and a lot more effective—when it’s social. Tweet & NEVER eat alone.”
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Category Archives: key people
Thank you, Susannah Fox (the other one, that is)
One year ago this week I ported over five years’ worth of posts from e-patients.net and launched this blog. But I have never shared the story behind the susannahfox.com domain name (and there is a story). Here it is: Continue reading
“Googling is a sign of patient engagement”
Wrap your head around that idea. It’s one of the many insights I learned from reading Let Patients Help — and I’m freaking quoted in that chapter!
But that’s E-patient Dave, seeing things that nobody else sees and, in this case, making up words like “boogloo” (Bing + Google + Yahoo).
As he writes: 81% of U.S. adults use the internet and 72% of them have sought health information online in the past year (see: Pew Internet: Health). This is not a sign of the health information apocalypse, he and Danny Sands say, but a sign of a groundswell. What if, instead of dismissing people’s interest in doing some quick (or in-depth) research online, clinicians gave them some guidance? That’s their advice: “If patients don’t know how to do the Boogloo safely, don’t stop them from engaging — teach them how…The solution is not to restrict and constrain. Empower the people: enable, and train.”
If you’re interested in getting up to speed fast on patient engagement, Let Patients Help is your passport.
Must-read: Adding up diagnosis errors
Laura Landro’s column in the Wall Street Journal today is a must-read: Adding Up Diagnosis Errors. Why? Let me count the ways:
- She is one of the most thorough, informed health care reporters around.
- She is covering an important topic that should be of interest to everyone.
- The study is behind a paywall so media coverage is the only way the general public can learn of the findings. Continue reading
Never assume that what you are seeing or experiencing is everyone else’s reality.
Atul Gawande can shine a bright spotlight, even with just a few tweets. On Saturday he linked to an article about new social media guidelines for physicians which states:
Aside from not “friending” patients [on Facebook], the guidelines also recommend the following to physicians:
• Don’t use text messaging for medical interactions, even with established patients, except with caution and the patient’s consent. Continue reading
Who provides the fuel for the health data fire? Hint: Look in the mirror.
“If iron ore was the raw material that enriched the steel baron Andrew Carnegie in the Industrial Age, personal data is what fuels the barons of the Internet age.” – a line from Somini Sengupta’s article in the Sunday New York Times, “Letting Down Our Guard With Web Privacy.”
I think personal data is fueling health innovation, which is why I hope Sengupta’s article is widely read in the health world. Who are the barons in the new health care enterprise? Who are the serfs? What assumptions are being made and what choices do people have about their health data — and are they aware of them? Continue reading
Rare Disease Day 2013
People living with rare conditions inspire my work every day. A few resources to check out:
Follow @RareDiseaseDay on Twitter or subscribe to my Rare Disease list
Read Wendy White’s post on e-patients.net: Rare Disease Day 2013: Help Spread Awareness
Read the Pew Research Center’s report featuring insights from people living with rare conditions: Peer-to-peer Healthcare
Tell all the truth but tell it slant
Scanning tweets from the current Institute of Medicine event (#iomPwP) brought a poem to mind:
Tell all the Truth but tell it slant –
Success in Circuit lies
Too bright for our infirm Delight
The Truth’s superb surprise
As Lightning to the Children eased
With explanation kind
The Truth must dazzle gradually
Or every man be blind –
Emily Dickinson (#1263)
If I can’t be there, I want people to not only report what speakers say, what audience members ask, but what they (the correspondent) thinks. One reason I follow Dave Clifford is that he seems to regard these events out of the corner of his eye and he tweets like he’s whispering (sometimes wicked) asides to a friend.
What if we could hack happiness?
One of the best phone calls I had in 2012 was with John Havens, who has written about the value of a happiness economy and how big data can make us happier and healthier. It reminded me of the “what if health care…?” conversations I was part of on Twitter this year: dreaming big, wishing out loud, no matter how irrationally optimistic it seemed.
Based on that conversation, I became a founding member of a committee of people working to create a new Indicator/Index for Happiness called The H(app)athon Project. I hope you’ll check out these slides and consider signing up for the newsletter/survey. Stay tuned for details about an event in NYC on March 20, 2013. I can’t wait to see what happens next!
Keeping it real
Two high-tech health events were held last week — an East Coast-West Coast data-driven smackdown. I chose East, but my eyes kept straying West, and I am very thankful that the organizers for both are archiving the videos online.
Here are a couple of stand-outs, first from Living By Numbers in New York City:
Jennifer Kurkoski and Brian Welle talked about how Google engages in behavioral design to help people avoid gaining weight even as they are surrounded by delicious food. Obvious tip: use smaller plates and you’ll eat less. Non-obvious tip: don’t trick people, tell them what you’re doing and bring them into the game you’re playing.
Meantime, in San Francisco, Alexandra Drane of Eliza Corp. regaled Strata Rx with her insights about how caregiving and stress might be even more serious health threats than diabetes and high blood pressure:
I loved how both of these presentations focused on the reality of people’s lives. That’s where I focus my energy and time. As I said at Medicine X (and plan to say at Connected Health): the best way to anticipate the future is to understand – and respect – what people are doing today.
For further inspiration, please see:
7 Key Take-aways from Wired Health, by Carol Torgan
Wired Health: Living by Numbers – a public health perspective, by Jodi Sperber
Wired health: living by numbers – a review of the event, by Jane Sarasohn-Kahn
WIRED healthcare conference shows data at work, by Mike Miliard
The Data Explosion, by Brian Quinn
Better Data=Better Health: A Conversation with RWJF’s Steve Downs
Data from health care reviews could power “Yelp for health care” startups, by Alex Howard
“Patient Engagement is the Blockbuster Drug of the Century” – a quote from Leonard Kish and the title of an article by Dave Chase
If you see other summaries of these events — or the other excellent meetings which took place last week — please post them in the comments (or let me know on Twitter).